Give Someone Hope

Can you imagine you or a loved one being diagnosed with an illness you have never heard of?

The road ahead is so long and daunting.

I was five months pregnant in 2019 with my daughter, Khaleesi. I was expecting a normal ultrasound, when the doctors informed me, she had developed a rare congenital brain disorder known as Dandy Walker Malformation Syndrome. I couldn’t understand what it was, how it happened, or what to do going forward.

Like many families in this circumstance, I felt anxious, angry, stressed, and confused.

We need help! Fortunately for us, there are many services offered through charitable organizations that offer support to those who are diagnosed and their families.

The Dandy-Walker Alliance

The Dandy-Walker Alliance does just that and so much more. This nonprofit charitable organization offers encouragement and support networks to families affected by Dandy-Walker.

The Dandy Walker Alliance funds research of the condition, with the goal of achieving a better understanding of the causes of Dandy-Walker and improving treatments to have better outcomes.

Dandy-Walker Alliance
https://dandy-walker.org/

You, too, can make a difference in the lives of families around the globe who are affected by Dandy-Walker.

By donating to the Dandy Walker alliance, you are supporting research and helping fund awareness programs and resources for families worldwide.

What is Dandy Walker Syndrome?

Dandy-Walker is a congenital malformation in the back area of the brain which affects its development.

This area of the brain controls one’s motor abilities, cognition, and behavior.

Dandy-Walker is estimated to affect

1 in 10,000 to 35,000

live births in the United States

*It is known to affect more females than males.

This brain disorder usually causes many other conditions to appear, such as central nervous system disorders, abnormal breathing, malformations of the heart, face, limbs, fingers and toes. The presence of multiple conditions shortens the life span of the patient.

After undergoing a series of prenatal CT and MRI scans, I learned that Khaleesi had developed other conditions. She had severe hydrocephalus, a cleft foot, and a horseshoe kidney.

The most common condition in Dandy-Walker patients, about 70-80%, is hydrocephalus.

A neurological condition resulting in pressure in the brain from the buildup cerebral spinal fluids. The excess fluid doesn’t allow the brain to grow properly. It causes an enlargement of the skull and 15-30% of patients experience epileptic seizures.

Treatment

The doctors told me that nothing could be done while I was pregnant, we could only monitor her development. They said that if she is born alive, I was to have a c-section and then they could perform brain surgery on her.

This was very frightening to me.

The brain surgery took place the just a few hours after she was to be born. They placed a special tube, called a shunt, inside her skull to drain the built up fluid and reduce the pressure in her head. The doctors had hoped that once the fluid was drained, her brain would be able to develop normally.

It took about three weeks for the fluid to drain out. During that time, Khaleesi was placed on a ventilator for breathing complications. She also developed CPT 2 deficiency, a condition that prevents the body from using certain fats or sugars for energy. The doctors placed a feeding tube through her nose where she would be able to ingest a special formula that was developed for her. They were also planning on performing surgery to repair her cleft foot and another surgery to place a permanent feeding tube in her stomach.

Unfortunately, these surgeries never took place.

Three weeks after the brain surgery, Khaleesi started having severe epileptic seizures.  She had contracted meningitis, a viral infection, around her spinal cord and brain. The doctors sat me down and explained that the prognosis was not good. They said that attempting to treat the meningitis in her condition would cause her great pain and she would have to go life support. They advise me that I had the choice of giving her pain medications and formula and to let her live her natural life painlessly. I did. She lived for 5 more hours.

Khaleesi passed away twenty-two days after being born.

Dandy Walker Alliance’s Purpose

Unfortunately, at the time I had my daughter, I was not aware of the Dandy-Walker Alliance. Looking back now, having this type of support would have been very beneficial to me. Having to go to all types of specialists and them explaining what the Dandy-Walker was and what to expect was overwhelming. They rarely used terminology that I understood and explained procedures and treatment options in complex ways. Many times, I found myself relaying on my own research to grasp some sort of understanding of what was said.

The Dandy Walker Alliance’s purpose is to support individuals with Dandy-Walker and their families at no cost.

For instance, this charity acts as an advocate as well. The charity lobbies local, state, and federal governments to pass legislations and raise awareness. It has worked with U.S. legislators to pass national Dandy-Walker legislations in Congress and even succeeded in having the month of May recognized as Dandy-Walker Syndrome Awareness month.

They provide the understanding, support and medical information needed for the affected families make informed decisions about health and treatment options.

The Dandy-Walker Alliance recognizes the importance of research and its benefits.

Little is known about Dandy-Walker Syndrome, its causes, and what the cure for it could be.

They fund and support research into the genetic causes of Dandy-Walker and any potential treatments. Their goal with this research, is to find out what the causes of Dandy-Walker and how to detect it early enough in pregnancy and intervene, non-invasively, to reverse or lessen its effects. 

I participated in quite a few studies that researched Dandy-Walker Syndrome with a similar goal in mind. It was a painful experience, and I did struggle many times. I didn’t want this battle I faced to make me feel like a victim, instead I wanted to be someone else’s hero.

Dandy-Walker Alliance Online Giving

You can also be a hero by getting involved with the Dandy-Walker Alliance.

Your donation will give someone hope.

Make a donation in less than 60 seconds and help change the lives for those with Dandy-Walker Syndrome forever!

Visit: https://dandy-walker.givingfuel.com/dandy-walker-alliance-inc